Governments negotiate key palliative care improvements

OTTAWA – Canadians want standardized long-term health care, but the federal government seems unwilling to deliver.

An Ipsos poll commissioned by Palliative Care Matters shows that 86 per cent of Canadians surveyed want the federal government to implement standards for improving palliative care, something Health Canada seems unwilling to do.

Canadian’s life expectancy is going up making palliative care, which includes long-term, chronic illness and elderly care, more important than ever.
“In the past a Canadian has stroke or heart attack and they would live for 12 months. Now they’ll live 12 years,” says Sharon Baxter, executive director at the Canadian Hospice Palliative Care Association. “It’s great, but it puts a terrible strain on our health-care system.”

© Drew May

In May, Health Minister Jane Philpott announced that the federal government plans to invest $3 billion into home care over the next four years. But a statement provided by Health Canada for this article said that “given that health care delivery is primarily the responsibility of the provinces and territories, which includes palliative care services, it would not be appropriate for the federal government to impose national standards.”

That’s bad news for palliative care professionals, many of whom see federal oversight as crucial for improving the service.

“The most important change would be for the provincial governments to have to follow national standards for care,” says Pippa Hawley, palliative care division head at the University of British Columbia.

Regulating access to home care for patients and increasing oversight in training nurses are two marked ways that federal oversight could effect change.

“The federal and provincial governments have been saying ‘yes, palliative care is important,’ but they haven’t been finding innovative ways to fund it and make it more accessible,”

– Sharon Baxter

Spend money at home, save at the hospital

“Palliative care is one of those things where you save more money when you spend, but you have to get better quality care to save money,” Hawley says.

“There are things family members are doing that need to be done by physicians, and there are things family members can do but need more training in,” Baxter says.

Inefficiencies, like under-skilled nurses, sporadic home care coverage and particularly hospital visits cost a lot of money and can be detrimental to care.

“The worst place these people could be is the hospital,” says Baxter. “We want them to live as independently and as contently as possible.”

Hospital visits and trips to the emergency room can result in poorer care for patients compared to palliative care, according to Pippa Hawley.  [Photo © Olivia Bowden]

Frequent hospital visits are costly, cause overcrowded emergency rooms and also add the risk of infection for patients with already weak immune systems. They are also largely avoidable for palliative care patients.

“Just by making sure patients eat right, that they’re going to doctor’s appointments and taking medicine properly, we know we could cut down on hospital stays,” says Baxter. “You can put in a low cost service, and cut out high cost hospital visits.”

© Drew May

Hospital alternatives

Hospices, where patients can live well and have caregivers nearby, are a good alternative to the hospital, but are also costly for taxpayers. Hospices are publicly funded. But according to CHPCA they rely on charitable donations for as much as 50 per cent of their funding.

Ideally though, palliative care professionals want to keep patients at home.

The entrance to the May Court Club in The Glebe, which also includes the May Court Hospice, serving Ottawa residents. [Photo © Olivia Bowden]

A patient that can live in the comfort
of their own home is a happy one, and more likely to be physically well, according to Baxter. But unfortunately, some homes aren’t very accessible to caregivers and a lack of national oversight means that they don’t have to be.

“Right now if you need home care, towards the end of your life, you might get 16 hours a week [home care support] in some provinces. In some provinces it’s not even that much,” says Baxter.

“In some cases there’s no home care at all,” says Hawley. “In some cases the nurses haven’t got the skills, and in some the nurses are great but they have way too many patients.”

The burden of home care

When professionals can’t see patients as much as they should, some of the onus for care falls on the shoulders of a sick person’s family members. While it makes sense for family to be involved in caring for a loved one, Baxter says many don’t understand how difficult that can be. In a very emotional time of a family member’s life, they must be relied on for around the clock care. It can be a heavy financial burden too.

And sometimes the primary family caregiver is unable to meet the needs of a sick one.

“Say your grandfather falls ill, we expect your grandmother to take care of him. Sometimes for her that’s just not possible,” says Baxter.

“There are things family members are doing that need to be done by physicians, and there are things family members can do but need more training in.”— Sharon Baxter“It’s a question of them being supported, so they can care for their loved ones to the best of their abilities,” says Hawley.

The Ipsos poll found that one in four Canadians will be a caregiver to a loved one at some point. Baxter estimates that 1.5 million Canadians are doing it at any given time.

Preparing for the future

Under the current regulations, palliative care has to piggyback on Canada’s acute care health system. Experts say that now is a crucial time to have the service enshrined in federal legislation.

As it stands, palliative care is not even mentioned in the Canada Health Act.

Funding for palliative care continues to be an issue, with services not mentioned in the Canada Health Act. [Photo © Olivia Bowden]

And the need for palliative care is expected to continue to increase. According to Statistics Canada, 16 per cent of Canadians are over 65 years old. As the baby boomer generation ages, that number will only increase. According to CHPCA three quarters of those 65 and up have a chronic disease.

Baxter says she doesn’t expect the Health Accord to be finalized until 2017. According to Health Canada, key discussions on the accord will be held later this month, with the provinces deciding how to divvy up the $3 billion.

That means a small window remains for palliative care professionals to make their voices heard.

“We can’t continue to do business as usual. We just can’t afford that as a country. Soon we won’t have money left,” says Hawley.